Our mom was diagnosed with ALS- Lou Gehrig’s disease back in May 2017.
This disease is very emotionally and physically draining for the person and the family. Unfortunately, it also creates extreme financial hardship. Our father who stopped working shortly after my mom was diagnosed has been her main caregiver. Her condition has continued to advance very rapidly and she recently had to have a tracheotomy done to help her breathe. She needs to be on a ventilator at all time. There is now respiratory care involved with her daily care and transfers from wheelchair to bed or restroom are more of a challenge. My father is unable to care for her on his own. He is almost 80 years of age and can no longer handle the increased workload in caring for mom. So, we are seeking the help of a shift nurse/caregiver to help us at home with my mom. Unfortunately, her insurance does not cover caregiving and it is a very expensive to have even just for a few day time hours of care. We are looking to cover the cost of a caregiver during the day hours only to help my mom get ready for the day, help with transfers, suctioning, trachea care, oral hygiene, respiratory care, and G-tube feedings.
January 21, 2019
Below is her entire journey with ALS…. In June 2016, Mom started having issues with her left hand. She experienced a loss of grip and slowly experienced increased weakness. Initial diagnosis was that she had a pinched nerve in her neck because the spacing between some of her vertebrae had diminished. As a result, she proceed with having neck surgery. A few months passed after neck surgery, and her left hand movement did not improve at all and, in fact, it got worse. During the holiday season of 2016, she tore a tendon near her hip which landed her at the ER and was later transferred to a skilled nursing facility for 5 weeks which is where we spent Christmas 2016 and New Years 2017. While at the skilled nursing facility, her voice started to degrade and she started to experience further weakness in her arms and legs. Upon being discharged from the skilled nursing facility, she started having issues with walking. As a result, in May 2017, we took her to a neurologist to have an EMG done and the diagnosis was ALS, a disease with no known cause and no cure. Hoping that maybe the diagnosis was incorrect, we sought a second opinion which also resulted in the same diagnosis. We then proceeded to take her to a university hospital which sees ALS patients as part of their ALS Clinic (a one stop shop where ALS patients can see an Occupational Therapist, Physical Therapist, Speech Therapist, Respiratory Therapist, Social Worker, Wheelchair DME, and doctor specializing in ALS within a time of 3 hours in one day). Needless to say, we received further confirmation at our first ALS Clinic that mom indeed had ALS. And, so our ALS journey began … Prior to our new journey, mom was a real estate agent who enjoyed meeting new people, a loving active mom to my sister and I, and a wife of 40+ years to my dad. And she was also the glue that kept our household together. As her ALS quickly progressed, we continued to bridge any shortcomings to make sure her quality of life was maintained. This required that my dad retire to care for mom and that I move in with them to help with the caregiving. She soon lost all of her mobility and lost her ability to speak. So, we upgraded her wheelchair to one that could more comfortably accommodate her and were able to secure her a Tobii Dynavox Eye Gaze device to give her a voice again. Most recently she experienced trouble breathing and had to have a tracheotomy done and is now confined to having a ventilator to help her breathe. As a result, we are now faced with having increased needs to care for my mom. We are now seeking the help of a shift nurse and caregiver to help us at home with my mom. We are also trying to purchase an equipped van to help transport her so she is not confined to her home. We are extremely grateful for any help we can receive and appreciate you taking the time to read this!